A mum-of-four with 36 rare inoperable brain tumours has described them as “little ticking time bombs”.
Karen Winterflood, 41, has already had five strokes in the past 15 years - and could have another at any time.
Her tumours are rare cavernomas, which are made up of abnormal blood vessels and look like raspberries. They can be very dangerous - the tumours can cause a stroke if they bleed and a haemorrhage could be fatal.
Karen, who lives in Hindley with her partner Mark Catterall, said she discovered something was wrong when she had a stroke while working as a security manager at Tesco in Hindley in 2002.
She drove home afterwards, before seeing a doctor. “Probably if I had gone straight to hospital, it might not have been so severe,” she said.
Doctors diagnosed her with multiple sclerosis, before another consultant looked at a scan and said she had cavernomas. The condition can be genetic and her father also had it, though he did not have any symptoms.
Karen was just 26 at the time and the stroke was devastating.
She said: “I didn’t know my children, I couldn’t walk, I couldn’t talk. I spent two weeks in a coma. I had lots of photographs and my mum used to put notes around the house about how to make a brew.”
It took a long time for Karen to recover and she still suffers from the effects of that first stroke.
“It took three years to walk properly again without the wheelchair,” she said. “I still walk with a crutch now because I fall all the time.”
Karen has had a further four strokes, though they were not as serious as that first one.
She says she is tired all the time and in pain, and the tumours affect her balance and speech.
She takes 36 tablets every day to deal with the symptoms, such as for headaches, pain control and to help her sleep. Karen has seen several neurologists but has not found anyone who will operate to remove the tumours.
As well as coping with the impact of the cavernomas, every day she knows that she could have another stroke.
Karen said: “If it bleeds I will have another stroke. If it doesn’t, nothing might happen.” But she does not let the condition stop her getting on with life.
“Nobody knows what going to happen, but the day I sit down and worry about it is the day I give up,” she said. If I’m stood up and walking, let’s crack on.”
Karen wants to raise awareness of cavernomas and help others affected. She said: “A lot of neurologists don’t even know about this illness.”
Karen is a member of Slimming World and decided to speak about her condition for members of groups in Scholes and Aspull.
Around 50 members joined her for a 5km walk through Haigh Woodland Park to raise money for Cavernoma Alliance UK’s CaverFamilies, which supports young people, their siblings and parents.
People were sponsored or paid to take part and it is hoped that hundreds of pounds was collected for the charity.
Karen raised a further £125 by selling cupcakes after the walk.